Please explain your relationship and briefly explain when your husband was diagnosed with cancer?
My husband, Mick Ratcliff, was diagnosed with penile cancer on 3rd October 2008. It was diagnosed when he went into hospital for a circumcision. After 3 operations in 12 weeks he had a clear scan in March 2009. He started a course of chemotherapy in June 2009 as a preventative measure, but began getting pain in his groin area between the first and second cycle, which worsened. In July 2009 2 tumours were detected in his groin and pelvic area. He underwent 10 sessions of radiotherapy to try and shrink the tumours but the tumours grew and Mick died on 27th October 2009, a day short of his 47th birthday.
How did you learn he was unwell? Did it come as a surprise?
At the time the diagnosis of penile cancer was a shock, although looking back on events shortly after this, when we learnt what the symptoms of penile cancer were it wasn’t that surprising. Other than a one off episode in September 2008, when he had felt physically tired at work, he had never actually felt unwell in himself . We just put the episode of tireness down to a virus as a few other people where he worked had been off with similar symptoms, but which passed after 24-48 hours.
On 3rd October 2008 Mick had gone into hospital for a circumcision, for which his GP referred him, after having had several visits to his GP and being treated for balitis (male thrush). We did not know then, as we do now that these symptoms can be early symptoms of penile cancer.
At the end of June 2008 he had an out patient consultation at the Urology department, where it was agreed to put him on the waiting list for a circumcision. Routine tests from this appointment showed a trace of blood in his urine and he was called in for a CT scan, which came back negative, as the penis was not scanned, which thus indicates to me, reflecting on things afterwards that penile cancer was not suspected at this stage.
At the end of July 2008, while we were away on holiday, Mick had some bleeding from his penis, which then stopped after a couple of days. Then in September he noticed a growth which started to protrude out of the end of the penis and looked a bit like a fungus. Mick actually visited our Urgent Care Centre one evening. The doctor there did not know what it was and prescribed anti-biotics and advised to go back to his GP if it hadn’t cleared in a week. During this time there was also a foul smell from this area.
On visiting his GP(a different one to whom he had seen previously), he informed Mick that he would contact the Urology department regarding the circumcision and stated that he wanted Mick to be seen quickly. At the same time Mick got the appointment for the circumcision and, on the morning of his due operation was examined by the Consultant Urologist, who had a strong suspicion of penile cancer from this physical examination. A biopsy was carried out instead of the circumcision and Mick was told following this that it was 99% certain he had penile cancer.
The news was being broken to him by himself by two, I think juniors of the Consultant, as I was arriving for visiting on the ward with our son, who was 4 years old at the time. We were later visited by the Consultant, who we found out was actually one of two Consultants for the penile cancer centre in the Northern Area.
As women, we are very conscious of the importance of regular breast checks and some of the signs to look out for. Do you think you were sufficiently aware of the signs and symptoms of male cancer?
I was aware of some of the common signs and symptoms of testicular cancer (Mick’s best friend, who was best man at our wedding, had died of secondaries from testicular cancer in 1997, aged 33) and prostate cancer but had never heard anything about penile cancer.
How did you both feel when you were facing a possible diagnosis of cancer?
Initially absolutely devastated and there were a lot of tears. I think we both immediately thought of Mick’s friend who had died from cancer and also of our son.
When the Consultant Urologist saw us on the ward he was quite positive and also told us that he was 70% sure the cancer probably hadn’t spread to the lymph nodes in the groin. He explained the planned course was to carry out a penectomy and then, due to Mick’s age, to remove lymph nodes from the groin. I remember him telling us to try not to think of all the negatives but it was hard at this stage not to. However, on seeing the Consultant at an appointment the following week, we probably both came out feeling a bit more optimistic, though still with anxieties.
When we found out in July 2009 that the cancer had returned and Mick had 2 tumours and that the cancer was not curable, I think I can safely say that this was the worst day of our lives. Initially there was shock, from us both and then just uncontrollable feelings of grief and disbelief. It is your absolute worst nightmare. Even though we both had a good idea that the cancer had come back, to be told it was not curable was soul destroying.
When someone is undergoing a series of tests, a diagnosis, surgery or a grueling course of treatment it can be very difficult to know what to do, how to help or be supportive. How did you manage?
The time period prior to diagnosis was not too difficult for us, as at this point Mick was not actually being investigated for cancer, and we just thought that we were looking at a solution for the balitis. When he was called for a CT scan that caused some anxieties but as it was reported as negative that eased those anxieties.
The initial surgery was a difficult time, as Mick had 3 operations in less than 3 months. His 2nd operation to remove lymph nodes from the groin was a particularly difficult time for him as his mobility was severely restricted, which was frustrating to him, and I just tried to give encouragement and reassurance that he would make a good recovery from this operation, which he did.
It was hard trying to juggle work, look after my son, visit Mick in hospital and then help to care for him when he returned home. I think the fact that we always had a very strong, supportive and loving relationship helped. I had to try and ensure that I continued to be all of those things and to be there to listen if Mick wanted to talk.
Did you find it easy to talk to family members and friends about the experience? Did you find people supportive or did some people avoid discussing what was happening?
It wasn’t easy telling people when Mick was initially diagnosed but we both had a lot of support from people we worked with, friends and family. I actually admired how open and honest Mick was about it in the initial stages, as for a man to tell people you have penile cancer must be a very difficult thing to do. In our experience most people were extremely supportive.
Towards the end of Mick’s life I don’t think some people actually understood how poorly he was and how restrictive his life was.
In my experience, I think it’s afterwards, when somebody has actually died, that a lot of people don’t know what to do or say.
How do you think family members and friends can help?
Providing practical help and support is important, but it is also important to ask when is the best time for this, and to understand and respect that people still need some time and space for themselves.
There were so many different people came to our house in the last few months. At times this was very welcome and at times it was exhausting.
Is there any further support you would like to be offered from the NHS (at the time, now and in the future)?
I work for the NHS so I appreciate some of the pressures that staff are working under and the effect that this has on the level of care on busy hospital wards. I think that the biggest thing that can be done in terms of the NHS, is reducing the amount of red tape and non clinical demands placed on clinical staff in order to allow them the time and energy to actually be able to carry out the basic day to day tasks required in caring for patients with the dignity and respect that they deserve.
Do you think the experience has changed you individually and in your relationship to your husband?
I don’t think the experience changed my relationship with Mick. We had a strong and loving relationship for 18 years and I think that this continued throughout his illness. Despite having input and support from others, I know that ultimately I was the person who he trusted most because he knew that I understood the extent of and complexity of his needs having lived it with him.
As an individual, I think the experience can’t not change you. I’ve lost someone who was a big part of my life. However, I try to view things positively and I think that, although being a single mum is tough at times, I am lucky to still have my life and to be able to see my son grow up. I know that Mick would have given anything to still have his life and see his son grow up.
What advice would you give other women who are facing a similar experience / diagnosis of cancer?
Accept offers of help and support from others.
Try to talk with each other as openly and honestly as you can but accept that you will experience a whole host of different emotions.
If you have children, definitely access some of the information booklets/sources for advice on how to talk to them about it. I think keeping our son in the loop and trying to keep his routine as normal as possible helped him to cope with it more easily.
What does the future hold?
That’s a difficult one because my future is no longer what I thought it was going to be, prior to Mick’s diagnosis. Obviously my main focus is around my 6 year old son and seeing him grow up and trying to support him through life the best I can.
In many ways I try not to think too far ahead but I do find setting myself goals of things to achieve and do helps me to have something to focus upon. Last year I set myself a 100 mile challenge made up of an 80 mile cycle ride and the Yorkshire 3 peaks walk. As a runner from a young age, I have set myself the challenge of running my first ever marathon and so am currently training for the Edinburgh marathon on 22nd May 2011, to raise money for Orchid.
Please leave any other comments you would like to share with us
Obviously, I think that raising awareness of penile cancer is important. It is very rare and fortunately few men are diagnosed with it. But it exists and so shouldn’t be discounted in terms of promoting awareness and developing treatment interventions through research.
Awareness needs to be raised not just amongst the public but also amongst health professionals.